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Post Surgery EXTREME Pain.. What's "Normal"?? Help Please! :)

Hi everyone!

My name is Lauren (27)- and in July I underwent two fusions to correct my scoliosis (approximately 60 degree for both curves). Fusion was from T2-L4. I have been doing everything my doctor recommended as far as walking and keeping within my restrictions. About a month ago (2 months out of surgery) my pain level was down to about 1-2 on most days. I was walking everyday and feeling great!

Around that time, I started to develop a shooting pain in my back that I can only describe as feeling like someone is stabbing me with a knife. It is a 9-10 consistenly everytime it happens, about 5-10 times an hour, lasting about 5 seconds or so. Has anyone had this type of pain?? If so, what is it? And any suggestions on how to get rid of it. It has continued consistently and at this point my pain level is a 15 when it happens. It is truly unbearable and takes my breath away. I told my doctor and he keeps telling me for the first year post-up I was have pain. But is the pain I'm describing normal??

2nd question.. 3 weeks ago so 2 months-ish out of surgery, with my bad luck I was in a head on collission (not going fast, probably about 10-15 mph). Had scoli xrays taken and it didn't show any breakage in the hardware (30 screws and 2 rods). Since then, everytime I stand up, in addition to the shooting pains, I am experiencing a new pain. Lower left back mainly.. I feel like I have to hold my back so I can stand up all the way- pain is EXTREME.. 9-10 level most times. Feels like a nerve or disc is pinched? Maybe herniated? Consistently hurts everytime I stand up. Just extreme pain.. hard to describe what it feels like... Doc said to give it one more week and we are going to do a CT just to double check nothing broke during my car accident. Is THIS pain normal? Any thoughts on what it could be?

I want to follow my surgeons advice as much as posisble, but I'm just not sure what pain is "normal" and to be expected the first year post-op. Still on Oxycotin occasionally, Oxycodone every 6 hours, and flexeral? (nerve pain medicine) every 8. Any advice/help/insight would be greatly appreciated!!!!

If I were to guess, I would say that the 9 and 10 level pain is nerve related. The soft tissues around can also get inflamed. Any little disturbance results in incredible pain, it seems that they heal at their own rate, and act just like an on/off switch. Either its 10 level, or there is no pain, no in-between.

You will need to take it real easy right now. I know its hard to get comfortable, but find whatever position that hurts the least, and just hang there as long as you can. You are in survival mode right now. I took many hot baths 106 degrees F and that helped with nerve pain. Scalding hot. Drink plenty of water if you do this because you lose water soaking in hot water and you lose it fast. I used a deep master bathroom tub, not a traditional hot tub since I was afraid of falling.

I also have had soft tissue injuries that resulted in incredible pain and thought for sure that something was seriously wrong, and had it subside on its own.
I have also had incredible pain and have had to have surgery. So, you just donít know. CTís donít lie, and are great diagnostic tools. If you get your CT scan, get burned copies for your records. Donít let them give you any guff about this, they are yours, you paid for them.

Is the first type of pain in the fusion area or just near the fusion area?

I don't know if it is relevant but the first pain you describe is how I would describe the pain from my herniated disk. I would be in a meeting and it would hit and I would scream out loud. It was not possible for me to avoid screaming because I wasn't prepared and because it was so intense. It's off the scale but short duration.

Good luck. They have to help you with this.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

If I were to guess, I would say that the 9 and 10 level pain is nerve related. The soft tissues around can also get inflamed. Any little disturbance results in incredible pain, it seems that they heal at their own rate, and act just like an on/off switch. Either its 10 level, or there is no pain, no in-between.

This is a perfect description of the pain associated with my herniated disk. 0... 10+... 0. Within seconds.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

Welcome to the forum, Lauren! You've found a great place to ask questions and get helpful answers. The folks here are amazing.

At just two months, like Ed said, you're in survival mode. I struggled with severe pain for the first four months. But by the fourth month, I had times with manageable pain if I held still and used a heating pad and Tylenol. At one point, I think in my second month?, the pain in a very small 1" area of the ribs on my side hurt so bad that I had trouble inhaling. I went to the hospital and they ran a bunch of tests to rule out heart, kidney, pancreas or other issues. The final diagnosis was just nerves recovering from the surgery. I did deep breathing exercises to help stretch my rib cage and used a heating pad around the clock, till the pain diminished after about 3 or so weeks.

Right after surgery, there was a lot of numbness everywhere. As the nerves slowly regenerate, new pains develop in areas that used to be numb. Some of the nerves seem to heal faster than others. When they hurt, it feels like a dagger stabbing deep and repeatedly, really brutal burning, pain at a level of 9 or 10. But gradually, the pains subsided. I don't remember any specific nerve pain lasting more than about four weeks. There was always new pain coming or going for the first eight months but I didn't get as many "stabs" after that.

Hang in there. The first four months are really difficult but you can do it! Months two to five were really hard for me because I only had Tylenol for pain relief. You're lucky if you have a hot tub or bath easy to get into. After the hospital determined the pain was just nerve pain, I used a heating pad almost constantly. I even put it on a long extension cord so I could pace around the house with the heating pad tied to my back with a scarf. At one year post-op, before I got to bed at night, I heat up the most critical place on my bed, where my middle to upper back will be, with the heating pad so I can lay down on a hot surface. That's quite effective for keeping away muscle spasms after I first lay down. Then I also press the heating pad against my side while I'm laying on that hot surface and it goes a long way to quiet the initial pain. At some point during the night, I have almost zero back pain and sleep fairly well.

1973 Age 15 diagnosed with scoliosis but told too old for surgery.
2001 age 43 told too old for surgery, did physical therapy & traction.
2001 to 2008 Intermittent use of home traction machine and TENS unit.
2009 traction no longer effective - physical therapy.
2011 More physical therapy. 2012 Collapsing scoliosis - MRI before surgery
At age 53, surgery on October 2nd, 2012 with Dr Hey
Fusion with titanium rods and bolts from T1 to pelvis.Post op x-ray

Wow, thanks so much for the information everyone! Very helpful! Pooka1- The shooting pain is mainly by my fusion area.. it's in the middle of my back, and my whole back is fused. Called the doc and CT is scheduled for Thursday next week. I was thinking herniated disk too.. so it's good to know what others have felt. Can a disc that is fused be herniated? The last three at the bottom are not fused- that's where the pain is when I stand up and shooting pains are there and in the middle of back. Thanks again, everyone!

Wow, thanks so much for the information everyone! Very helpful! Pooka1- The shooting pain is mainly by my fusion area.. it's in the middle of my back, and my whole back is fused. Called the doc and CT is scheduled for Thursday next week. I was thinking herniated disk too.. so it's good to know what others have felt. Can a disc that is fused be herniated?

Well you are not fused yet. If you are fused then I don't think it is possible to herniate a disk because there is no differential movement. Also, I think they remove disks in some fusions.

The last three at the bottom are not fused- that's where the pain is when I stand up and shooting pains are there and in the middle of back. Thanks again, everyone!

You are very young and I think they were trying to spare as many motion segments in your lumbar. If those last unfused vertebra are well aligned, you might go a long time if not forever without needing more fusion. I don't know what it means that you have pain below the fusion so soon after fusion. My only comment is to send the latest post-fusion radiographs to someone like Dr. Hey who is focused on the matter of aligning unfused vertebra and has a few blog posts about the lengths he will go (osteotomies, etc.) to keep the fusion as short and possible and to make sure the unfused vertebra are as aligned as possible.

Good luck.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

Sharon, in having 6 verified herniated discs now, you would think I would do better at description. (smiley face) 6 herniationís now with all sorts of different ways of dealing with the pain through the years. I was very surprised when the steroid pack and diclofenac relieved my neck herniationís this past April. It was magical. Linda mentioned hanging and waiting, and I was prepared for anything....(more surgery) I was prepared to jump since the pain of multiple herniationís ďrepeatingĒ itself is enough for anyone to do just about anything.....10 level nerve pain is or can be a desperate situation.....

Lauren, we of course are waiting to see what happens after your CT scan. Vehicle accidents are not the best things to have happen in our recoveries.

I donít know if a disc at 2 months post can herniate.(good question) After it fuses in time from being held still from the hardware, it should solidify and ďfuseĒ. Average fusion time in the literature takes 12 months. This can be plus and minus quite a bit of time since a child probably fuses ďreally quicklyĒ and with some patients, not at all. Fusion material can be like cheese cake, or solid as a rock......and this can be after a year. I learned this at the Scoliosis conference at UCSF. You donít get to ask multiple scoliosis surgeons questions at a meeting too often.....

One thing that can happen is ďcrackingĒ a fusion from a force....lets hope this isnít the case, and its just soft tissues that are inflamed. Muscle spasm like Jen said is also a possibility, I have had that happen upon a really hard landing (high force) off a large ski jump.

We have our fingers crossed for you Lauren. Try to take it real easy right now.....scoliosis surgery recovery doesnít happen fast.

Sharon, in having 6 verified herniated discs now, you would think I would do better at description. (smiley face) 6 herniationís now with all sorts of different ways of dealing with the pain through the years. I was very surprised when the steroid pack and diclofenac relieved my neck herniationís this past April. It was magical. Linda mentioned hanging and waiting, and I was prepared for anything....(more surgery) I was prepared to jump since the pain of multiple herniationís ďrepeatingĒ itself is enough for anyone to do just about anything.....10 level nerve pain is or can be a desperate situation.....

My mind blocked out periods of time in my unplanned* natural childbirth to save myself from the pain. Unfortunately I don't remember too much of my twins' births because of this despite being undrugged. But I remember every minute of the disc herniation pain for some reason. I am afraid to forget.

*apparently the childbirth class I took was a natural childbirth class. Because I took it at the hospital where I gave birth, they had on my records not to give me drugs. I never at any point planned a natural birth nor did I ever tell anyone I wanted one. Yet it was foist on me (minus one hit of stadol which somehow my husband convinced them to give me). I could not understand why they weren't giving me drugs and couldn't get across to them that I wanted them. I'm still mad about this situation.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

I remember every minute of the disc herniation pain for some reason. I am afraid to forget.

Sharon, there are some things in life when its beneficial to forget. Imagine that! You move on.

Maybe its just part of my recovery, forgetting about our pains, forgetting about being mad about something or mad at someone. Iím not letting these types of feelings bother me anymore. Its not worth it. When my sudden neck pain came last March, it was back to ground zero again, and well, I think that I have accepted it as part of growing old with scoliosis. You take it one step at a time really. Incremental bunny hops through life. Boing, boing, boing.

I can understand how 90 year old people feel like teenagers. Nothing changes, its just the body that changes. When you realize that you cannot control things like this, pain, certain feelings, etc, you gain inner peace. This is crucial for staying healthy. Laughing often and acting young might seem silly to many, I donít let it bother me at all, and its nice to see elders staying active, joking often, and acting silly.

For those that have 10 level pain, this is a critical situation.....I have begged to be knocked out quite a few times actually.....And I guess I have to laugh about it now because thatís all over with....Its in the past. For those in that situation currently, they have to remember that these are just temporary things that happen, the bad chapters of the book, the low points in our lives always seem to pass. They do. I have done a few of these painful cycles.

With all the medications through the years (more than Robin Williams during the Mork and Mindy days, He he) I came to the conclusion that you cant do without the oral opoids even if they arenít worth a damn. They are so nasty...... Certain NSAIDís work quite well, and hot 106F degree water is the easiest way to some sort of pain relief. You can always find a bath tub somewhere....

Iím not mad because of my scoliosis and have not been since I was diagnosed in 1974. Maybe that was due to the built in survival instinct that youngsters have. They all have it, kids are very brave when medical challenges occur. I then figured that I would take it one step at a time. Incremental bunny hops through life, of course with a few x-rays once in a while.....

Sharon, there are some things in life when its beneficial to forget. Imagine that! You move on.

Maybe its just part of my recovery, forgetting about our pains, forgetting about being mad about something or mad at someone. Iím not letting these types of feelings bother me anymore. Its not worth it. When my sudden neck pain came last March, it was back to ground zero again, and well, I think that I have accepted it as part of growing old with scoliosis. You take it one step at a time really. Incremental bunny hops through life. Boing, boing, boing.

I can understand how 90 year old people feel like teenagers. Nothing changes, its just the body that changes. When you realize that you cannot control things like this, pain, certain feelings, etc, you gain inner peace. This is crucial for staying healthy. Laughing often and acting young might seem silly to many, I donít let it bother me at all, and its nice to see elders staying active, joking often, and acting silly.

This is why you are one of our premier spokesmodels. :-)

Iím not mad because of my scoliosis and have not been since I was diagnosed in 1974. Maybe that was due to the built in survival instinct that youngsters have. They all have it, kids are very brave when medical challenges occur. I then figured that I would take it one step at a time. Incremental bunny hops through life, of course with a few x-rays once in a while.....

Ed

That's true about kids. My kids certainly appeared so brave in the face of their surgery. Meanwhile my husband and I were dying one thousand deaths.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

I have known many who have had hard times dealing with these kinds of things, especially my parents and I like Tonibunny,(similar story) basically kicked to the curb years ago, due to various reasons...... With my parents, I think that happened because all their efforts were spent on my brother who is a very rare Kleinfelter case.....They donít know diddly about this disorder......we have a long long way to go. My brother is doing well now,(He is a rock) and that happened many years ago, all water under the bridge. I have not told Tonibunny, but she really is by British sister. I have trouble spilling this emo stuff.....

All kids deserve full equal attention. Should I copy paste this a billion times? Use red ink?

Sharon, you are a good parent. Your conduct has been exemplary as a parent regarding scoliosis.

Tough admissions. I guess they have to be dumped somewhere, a million thoughts cant fit in 10,000 threads, sorry Lauren. Please let us know how you are doing?